tamoxifen and Her2 - benefit or no benefit?

[CBergman]

Hi everyone..... I'm new to this board. My diagnosis was stage 2a, 1.8cm, grade 3,er,pr+, her2+ at 12/03.
TAC 6 cycles, rads, tamoxifen since 9/04.

My question is, has anyone's oncologist told them tamoxifen isn't beneficial for her2 and put them on something else? Or have you just refused to go on it as a result?
I've been reading alot on the web that it's not as effective for us her2 girls and may even stimulate. YIKES!

When I told my onc about this, she just disregards it as the jury is still out but from what I read, it doesn't sound like it!
I've been on tamoxifen for 2 years and it's reeking havock on my body. really achy joints, weight gain, etc..... hate to think I'm taking it if it's not really doing anything for me. I was diagnosed when herceptin wasn't approved for early stage.
Do you know if you can get herceptin after 3 years out? is it still effective?

thanks everyone, and glad to have found you!

cheers,
Cindy

[Sandy H]

You are ER/PR pos. so that is why you are on a hormone. I am not aware of anyone going on Herceptin after the first year and especially three years out. Usually, if one is going to reoccur it will happen within the first year although not always and that is the reason for using the Herceptin for early stage. I don't know how old you are and if you can change to a different hormone. It will depend on you menopause status. Something to ask you oncologist or get a second opinion. Wishing you well, hugs, Sandy

[panicked911]

I consulted with thre oncologists when I was first diagnosised a little over a year ago and all said no to Tamoxifen - while it may not harm studies ( as your onc said the jury is still out) have indicated that the the AI's such as arimidex and femera offer more protection.


It also depends at what age your diagnosis was made. if you were in perimenapaus usually 40 anad over oncs tend to push to the AI's - if you are still in your 30's or younger it is tamoxifen with the thikig beig that yu are still to young to be pushed into menapaus. I was 43 at diagnosis and like you am a triple positive. I have opted to shut down my ovaries with lupron shots and am taking arimidex. This combo is no picnic either with th muscle aches stiffness etc.

As for takig herceptain three years out - Oncologists are now starting to give hecepta without chemo - I was one of those who receivd it this way. So how many years away from chemo is not the issue. The issue is need three years out from diagnosis. That is the question you ned to discuss with your oncologist.

Hope this helps,

Susanne

[saleboat]

Hi Cindy,

This issue is so confusing!

I also saw three Oncologists about hormonal treatment, and all three recommended Tamox for me. It took some time and research to get my head around it, but I'm now very comfortable with the decision. There are unknown risks to removing/shutting down one's ovaries, and given that I'm highly Er and Pr positive, the benefit of AIs is not that great vs. Tamox. I think I would make a different decision (AIs) if I only had one receptor positive because it is in this case that AIs showed the greatest benefit vs. Tamox.

Of Her2+ patients, if they are hormonally positive, they tend to have only one receptor positive. However, younger women are more likely to have both receptors positve.

Congrats on being almost 3 years out. I can imagine that the worries never really goes away, but it sounds like your highest risk time for recurrance is behind you.

Good luck,
Jen

[SusanV]

Cindy,


A website that you may want to visit that has good information about Tamoxofin is www.breastcancer.org (http://www.breastcancer.org)

Go to the tab at the top marked "Treatments" It will give you how tamox works, who it works best for, benefits, associated risks etc.

I know this info was helpful to me !!

All the best

Susan V

[CBergman]

Thanks to all that have responded. It really helps me. I couldn't wait to get home and see what responses I got. This has been on my mind for some time now. I saw my gynocologist yesterday and he said that tamoxifen has taken over my hormones. It's a weird case with me. I haven't gotten my period since 02/04 but estrogen is up and still considered pre-menopausal. UNTIL yesterday. Estrogen level dropped to 11 which explains the sudden weight gain. No hot flashes or any menopausal symptoms. Gyno says I'm peri-menopausal now but still baffled. I just don't like to mess with the hormones like this. it's not natural. I know that in one way it's good because I'm er,pr+ but in another way it totally SUCKS! right now it's a question of quality of life for me. btw, I know tamox is a blocker but in my case i think it's doing more than blocking!

I was 39 when diagnosed. 42 now. was in the gray area for period returning. But it's been in limbo since!

hugs to all,
Cindy

[CBergman]

Susanne,

What was your diagnosis since your oncs said no to tamoxifen? were you all three positive? what stage? grade?

cheers,
Cindy

[VirginiaGirl]

Cindy, I was 39 at initial dx and refused tamoxifen coz I didn't want to mess around w/ my hormones any more than necessary. Plus, from what I read at the time, after 5 years on tamoxifen it can start to act like estrogen, that's why they take you off it. Now at 41, with mets dx, I tried tamoxifen before getting my ovaries out, have not had a response, so went off it. The plan is to get mets stable, then try an AI. I was worried about getting ovaries out since I was still regular, etc. but have to say I'm very happy it's not been a big issue and don't regret having it done even though haven't responded yet. Good luck!

[CBergman]

Liz,

Hi there! I noticed you had alternative chemo. is that holistic?
if not, what chemo combo did you get? are you going to do herceptin?

hugs,
Cindy

[Petesmom]

Hi Cindy,

I too was early stage for a recurrence in 2005 (stage 1, grade 2 ER+, HER+++) . My onc said no to Herceptin and put me on Tamox. I was 52 and still premeno. I did some research and found some literature about Tamox possibly not being the best choice for women who are Her2 positive. I opted to have my ovaries removed so that I could take Arimidex which I have been on for over a year now. So far so good but I have had some hefty side effects in terms of joint pain from both the surgical menopause and the Arimidex but am coping with those. These are tough choices but I am happy with my decision.

Petesmom

[John21]

How about Aridamex! Might tolerate it better. It is suppost to be the replacement for Tomoxifin anyway.

[CBergman]

thanks again for your responses. I've made an appointment with my onc to talk about this more. I'm also having genetic testing done on monday. My dad's side has a history and I was never tested. it'll help with decision making.

As for arimidex, my onc doesn't want to put me on it yet because she doesn't think I'm quite post menopausal. If my estrogen is still low at the next follow up, she probably will. She just says they fluctuate and first wants to keep an eye on them.

Cindy

[Becky]

I did what Petesmom did and I have no regrets. I haven't found much in the literature that says that Tamoxifen works well in Her2+ women. My case also had the complication of me being PR neg and only 50% ER+. I have absolutely no regrets even though it was rough being absolutely premenstrual and going to almost absolutely no estrogen (once the AI was added after oophorectomy).


Have a nice weekend

[Bev]

Hi Cindy, I've been having difficulty deciding if I prefer the side effects of tamox (uterine cancer) vs the side effects of AI (osteoporosis). We are all individuals so what is true for one may not hold for all.

I'm 47, IIB, HER2, ER and PR+. Tamox has been around awhile and is effective in lowering recurrence rate. There are some studies that show switching to an AI after 2 years on tamox show even greater efficacy on preventing recurrence. You have reached this 2 year threshold. AI's will not work at all if your estradiol levels still show you to be premenopausal. That leaves you with the choice of Lupron shots + AI or oophrectomy. There are some studies that show using AI's from the get go are superior, if you are post meno.

As far as tamoxifen resistance, I think that was most pronounced in PR negs but can't say for sure.

I've been on tamox for 9 mos. It's easy. We've kicked around switching but there's been no hard push.

None of the studies are exactly tailored to you. If I were you I would closely look at results published between now and June and make a decision in June. That's what I'll be doing. Good luck, BB

[AlaskaAngel]

I again raised the question of use of tamoxifen with my new onc this week. The answers will vary of course somewhat depending on whether one is premenopausal or perimenopausal or menopausal since AI's are pretty much limited to use with menopausal women and either tamoxifen or raloxifene are the alternatives other than ovarian ablation plus various meds to become menopausal and stay there if you are not truly menopausal after chemo. Anyway, I am menopausal and since I am HR+ am recommended to have an AI. The onc was pretty definite about not using tamoxifen for HER2's at all, so that is about all I have to contribute to your question.

AlaskaAngel

[karenann]

I did research on my own which made me want the AI over Tamox for Her2+++ bc. Also have had the opinion of six oncs who have all said no to Tamox when Her2+++.

I am currently on Aromasin

Karen